Sink or Swim?

Rachel Garlinghouse

| Dec 4, 2009

The road to my diabetes diagnosis was anything but easy.  Over Thanksgiving break during my first semester of graduate school, I fell ill with a horrific stomach virus. I was too busy to be sick, swamped with student essays to grade and papers to write for my own classes. But as the following year and half progressed, I felt worse and worse.  I suffered from chronic sinus infections, drastic weight loss, extreme thirst, and constant fatigue.   As I bounced from doctor to doctor, I grew increasingly discouraged.  No one could figure out what was wrong with me.

Aside from feeling terrible physically, I struggled emotionally with my symptoms, particularly the weight loss.  Not a day passed that someone didn't make a comment about my weight.  A man at my gym walked by me one day, gave me an up-and-down glance, and said, "Eat a hamburger" before walking off.  My friends followed me into the bathroom to see if I was throwing up my meals.   My doctor asked me if I had anorexia.

I felt isolated, helpless, and dehumanized.   On one hand, I was pursuing my educational goals and enjoying being a newlywed, but on the other hand, I was suffering a slow death, one without reason or cause. 

Thankfully, I was diagnosed with diabetes just in the proverbial "nick of time."  I entered the emergency room of my local hospital on a Friday and left five days later with a diagnosis  and an armful of brochures.  Although the diagnosis shocked me, I was mostly overwhelmed with relief.  I finally had an answer, and I had hope that I would survive and eventually continue with my life.

Little did I know that being labeled as a "diabetic" would bring about a whole new set of challenges.  Mere acquaintances questioned my food choices, many asking if I should be eating a certain food because, they said, I shouldn't have sugar.   Their ignorance and criticism astounded and disappointed me.  Other people told me that they could "never handle" a disease like diabetes because they were scared of needles.  They didn't understand that without my needles (and medications), I would die.  They also failed to understand that this disease had already taken so much away from me, and that their comments only hurt me further.  A family friend remarked to my mom, "It's a good thing Rachel got diabetes, and not me.  She can handle it."   I guess it was meant to be a compliment, as I have always been a driven individual, but it only made me angrier. 

Once, a child said to me, "My uncle has diabetes.  He had his feet cut off."  Encouraging, right?  But that's what the child understood to be diabetes---something as frightful and life-altering as amputation.  Likewise, a cousin of mine once asked, "When are the doctors going to get you off that insulin?"  His naiveté wasn't surprising, considering the ignorance that I am constantly facing, but his question added to my frustration.   I realized that a diabetes diagnosis promoted me, without my permission, to a medical educator and diabetes defender.   

The misconceptions and stereotypes surrounding diabetes impact each of us who have it. I spent a lot of time being angry post-diagnosis.  I was rightfully bitter toward the doctors who failed to diagnose me.  I was swimming in defeat because every time I turned around, someone had a comment about my disease.  People would approach me and tell me I looked "so much better" than before my diagnosis.  Though these comments were likely accurate, they were hurtful.  Additionally, I felt that God could have given this disease to someone else. Why me?  Why did I deserve this punishment?

As months and years progressed, however, diabetes became more normalized in my life, as my diabetes nurse educator had promised it would.  I began to grow into a new attitude, one of permission to live with my disease.  And not just to live, but to live well. Seasons of anger, bitterness, confusion, and depression are normal and even helpful to a person with diabetes.  My attitude is to let myself feel what I feel, but never to accept these feelings as permission to allow defeat.  As Maya Angelou said in a recent interview on the Today show, "We can't go through life with two catcher's mitts on.  We have to throw back sometimes."

I daily have to fight the negative voices and influences that surround all of us who constantly battle and live with diabetes.  It might be the doctor who doesn't have a good bedside manner, or the friend who asks me if I should really be eating a piece of pie, or my own mind, which tells me I'm still not doing enough to manage my disease well.   Discouraging?  Yes.  Disheartening?  Sure.  Disappointing?  Absolutely.

However, I know that I have to "throw back" in my own ways.  This means stopping communication with someone who is constantly negative. For example, I am greatly disturbed and upset with women who tend to be dramatic, gossipy, and catty.  Consequently, I do not befriend such women because it creates a wave of negativity that can affect my mood and thus, my diabetes care.  When my focus is taken away from my health and emotional wellbeing, my blood sugars are compromised.

When someone makes a comment about diabetes that is both negative and inaccurate, I take the person's invitation to talk about diabetes, and I educate that person.  When my aunt said to me, "Oh, I forgot that you shouldn't drink that" after offering pouring me a glass of juice, I explained that I can have juice, but that I choose not to include juice in my meal plan because I would rather consume my allotted carbohydrates from a different food.  

Another way I "throw back" is that I take what I have learned and share it with others.  Whether it involves learning of a new online diabetes community or blogging about a recent doctor's visit, I'm talking about my disease.  As the number of people with diabetes continues to rise, I feel that the number and quality of conversations about it need to increase.

I didn't choose diabetes, I didn't earn it, and I don't deserve it.  But I've learned to accept that diabetes is what it is.   I have a choice:  sink or swim.  I choose to swim, and to do so with purpose, conviction, and determination.   No matter what has happened to you in the past, I hope that today you make the necessary changes in your life to live well with your diabetes and to educate others.

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Categories: Blood Sugar, Diabetes, Diabetes, Food, Inspiration, Insulin, Personal Stories, Type 1 Issues


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Comments

Posted by Anonymous on 5 December 2009

We all are faced with challenges in life. It is how we face these challenges, together, that defines who we, collectively, are.

Thanks for sharing your story.

Posted by Anonymous on 5 December 2009

I agree totally with your article and have been thru and heard the same comments. I'm on an insulin pump and most people are clueless about type 1 or type 2 diabetes.

Posted by Anonymous on 6 December 2009

How can doctors have missed the obvious thirst, weight loss -- for starters? And how could they not have tested for sugar in the routine blood test --- surely they ran tests of some sort for this mysterious unexplained malaise! Shame on them!

Posted by rosiolady on 6 December 2009

Wonderful article! I don't know how anyone could have said it better! It certainly reflects my experience so closely that it's positively eerie! Nothing but exclamation points for this writer!

Posted by Anonymous on 6 December 2009

The level of ignorance from the lay public hasn't changed much, probably in part because of the complexity of diabetes (and the media's ignorance, too [when an article is written, is it about Type 1,2, gestational???]). Some of the interaction that you experienced has not changed for me, over many years of being diagnosed (Type 1 since 5, now 50), but it's very sad that you weren't diagnosed by many physicians until you became critically ill.

Thank you for a well written article on initial experiences, and personal strategies to rise above the emotional side of this diagnosis that can be so much to deal with every day.

Posted by ndocroth on 6 December 2009

Excellent article pointing to the lack of education among the general population AND the medical professions.

Education is being called for even more, considering that on average it takes 8 to 14 years for a diagnosis of diabetes and that research on over 50 health conditions points to their possible use as early risk indicators.

Talking lacking education: "Chronic sinus infections, drastic weight loss, and constant fatigue" along possibly with occasional or constant bloating and irregular stools (constipation and/or loose stools, even diarrhea) may be due to an underlaying gluten-intolerance. A strong link between celiac disease and type 1 diabetes has been well established, yet is still not widely known.
Many T1Ds find great help by going 100% gluten-free.

Rivkah Roth DO DNM®, author of "At Risk? Avoid Diabetes by Recognizing Early Risk - A Natural Medicine View" and the Diabetes-Series Little Book "Gluten-Free for Diabetes"

Posted by Anonymous on 6 December 2009

You have come to the same conclusions that I did many years ago...I applaud you. My favorite saying is "it could be worse".

Betty

Posted by Anonymous on 6 December 2009

Hiya, sugar :-)

I'm 55 and have been a Type 1 diabetic since I was 16. Like you, I have found virtually all the so-called 'experts' to be inexpert in the extreme - and arrogant to boot.

So, like you, I have become a true expert on diabetes and all related matters, including the metabolic syndrome. As my good friend, Dr Joe Prendergast of http://www.endocrinemetabolic.com, says 'blood sugar control is an important thing but metabolic control is everything!''

I find a low carb diet to be a key element in the successful management of my diabetes. I recommend Dr John Briffa's 'The True You Diet' book for its very detailed questionnaire, enabling you to find out if you are best suited to a hunter, gatherer or hunter-gatherer eating regime. As my partner is vegetarian, I make liberal use of the local delicatessen for pre-cooked slices of turkey, ham and chicken breast!

I've had a very happy, exciting and successful life and continue to do so. I power walk every evening and coach high level football here in London (you Americans call it 'soccer').

Sometimes 'hell is other people' but don't let them (or anything else) get you down. Be yourself. Thank you for your wonderfully passionate article. You're an inspiration for all of us T1s.

Love from London

Terry

Posted by Anonymous on 6 December 2009

All I can say is AMEN to everything you said!!

Posted by eelady on 7 December 2009

Great Story!! My experience was similiar and I'm also fighting hurting and ignorant remarks. Some of these remarks come from other diabetics. I know what I have to do is for me and I don't let anyone else let me feel bad about what I have to do for me.

Posted by Anonymous on 7 December 2009

What a great job of expressing what we all are facing. I was self-diagnosed 49 years ago when I took Biology and realized I had all the classic symptoms of diabetes. My doctor had never even done any blood work even though I was sick all the time and extremely thin.

Now many years later the ignorance for type 1 is even greater since all the attention is focused on type 2. I constantly hear/read that I can cure myself with proper diet and exercise! If only it were that easy.

A response to an earlier article indicated a need for diabetics to be allowed to educate others. The best way to do that is to educate family and friends, physicians, and to be involved in support groups. One has to become thick-skinned and chose who can be educated and when to ignore off-the-wall comments.

Posted by Anonymous on 8 December 2009

For little BeeJay ... for 50 years this month, she is a Labile Insulin Dependant Diabetic who is a real big bruiser ... five feet one inch, 105 pounds, reads and studies her type one like so many of the other commentators here.
A (Medtronic) pump has given her a different and better life style.
Find a good ENDOCRINOLOGIST who listens and who communicates. Even a "well meaning" GP often gives some stupid advice.
Be agressive .. be a well informed, active participant in your own care. When YOU are well informed YOU will lead a better & much more interesting life (and you can "weed out" the negative and the poorly informed)
/s/ A Husband of a real doll.

Posted by Anonymous on 9 December 2009

I can totally relate to everything you've written, as I'm sure most Type 1 Diabetics can. I think my Diabetes has made me a more accepting, and understanding person. I have Diabetes and there is nothing I can do to get rid of it, so I am going to do everything I can to make the "best of a bad situation" I am 35 years old and have been a Diabetic since I was 4 years old. The funny thing is, I don't think people are becoming any more informed about Type 1 Diabetes than they were when I was 4. I guess part of having Diabtes is being the voice in my community or friendship group and doingwhatever I can to make people aware of Type 1 Diabtes and life with Diabetes. I agree with one of the comments above when I say, it could be worse!

Posted by Anonymous on 14 December 2009

Thank you for sharing your story. You said you like to find new online communities- TuDiabetes.org I've found to be extremely helpful with great new information as well as wonderful people. Blogs, forums, chats, articles, photos, etc. It's a community where Diabetics can feel welcomed and at home because everyone there is dealing with variations of the same thing. Also FightingTheUnseen.com Great article. I've had a very similar experience with diagnosis, as well as learning to deal. Thanks for sharing. Katherine

Posted by Anonymous on 14 December 2009

T1 4-Present (34).

Great article. It's heartening to hear that I'm not the only one. I've been through 3 Endo's in the last 4 years and still haven't found one willing to put me on a pump. The last one said they were only for kids. Adults couldn't adjust to them... I find the medical community to me MUCH more ignorant about the disease and it's effect on a person's life than the average lay-person.

It's extremely frustrating to be told, by your endo, to eat the exact same thing for every meal for two weeks, test 8-12 times a day and give them the results. And then hear nothing from them for 3 months....

I sometimes find myself just taking my lantus and dealing with the joint pain and the migraines. It's easier than dealing with the damn doctors.

Posted by lorn63 on 3 March 2010

As a healthcare provider in an Endocrinology clinic, and having been married to a man who has had Type 1 Diabetes for 40 years, I am appalled that your diagnosis was missed for so long. Shame on the healthcare providers in your area! And to "Anonymous", my husband was placed on a pump 10 years ago, and it is the best thing that ever happend to him, as well as my kids and myself! Unfortunately, there is still a large knowledge-deficit among Lay people on the treatment of diabetes. Many think it is still treated the way it was in the 60's. When someone makes a comment to my husband on what he should or shouldn't be eating or doing, he politely says to them "I work diabetes around my life, I dont work my life around diabetes". this is the mind-set we get our patients into at our clinic, and the results are much more satisfying, rather than tell someone the "have" to do this, or they can "only" eat that. Good luck to you Anonymous, in finding an endocrinologist who will listen to you. I wish you lived in my area!


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